Comment

Comment by Connie Austin on June 9, 2012 at 1:43pm

Jan, my post transplant drugs (Prograf and Acyclovir) are charged to Medicare by my specialty pharmacy.  Medicare covers most of it.  I have a very small co-pay.  I use Part D for all my other meds.

Comment by Donna Russell on June 9, 2012 at 1:38pm

@ Jan -hello :)  In your response you mentioned a 3 yr. med cutoff with Plan D - is that Medicare you are talking about??? Details please.  thnx, Donna 

Comment by Jan Ward on June 9, 2012 at 1:02pm

Thank God - Between Soc Security and an Aetna wrap-around I was covered for nearly everything. If it hadn't been for the Mayos' claiming the Tace as an outpatient procedure (although they wouldn't let me leave for 24 hrs) it would have all been.

Of course - I'm still only 2 1/2 years out - don't know about the 3 year cutoff for the meds from plan D...watch and see.

Comment by bobbie c on June 9, 2012 at 11:07am

david, i couldnt agree more about the single payer plan !!

Comment by David Goodman on June 9, 2012 at 8:27am

You're right, Stu. I had BC/BS and always received great care, above and beyond what I saw others get, especially when it came to extra tests and length of stay. My insurance cost me a ton of money, but it was worth it, for the superb level of care. That's why this country needs a single payer plan. No one should die, for lack of money to pay a doctor or hospital.

Comment by Stu L on June 9, 2012 at 7:34am

I feel so sorry Susan for you and Gazz and what you have to go through.  I feel almost guilty for the easy time I had with the whole TP process.  I have private insurance and am the employer as well. I was on the transplant list with HCV and HCC , so got extra points each month as I moved along the list My wonderful daughter kept pressing to donate and although I didn't want to have her donate at her young age.  eventually I agreed and the tp was scheduled.  At no time during the process did I have an issue related to costs.  I am true believer in Health care reform so we can all enjoy equal treatment.  After reading everyone posts it appears obvious that those with private insurance receive preferential treatment,  I wish you the best success in moving through the process and getting on the list.     

Comment by Tom Russell on June 8, 2012 at 8:22am

Hi All. Susan, I went through all the VA stuff. I dont know if I was ever as bad as Gazz, but I had my problems as I guess we all did. I was in MICU for a few weeks. I didnt even know there was such a place. I found there's only two ways out of there. Luckly for me it was with the sheet down. For the most part I had pretty good care throughout the process. A good team of Doctores and nurses. I am the squeaky wheel but I was also the poster child for transplants. But there were lots of mistakes and missteps at the VA. I did everything I was told. And if it was up to them I wouldn't be here today. They have requirments that the other hospitals dont. To get transplant at the Houston VA which was the closest to me would require a MELD of at least 33. They even gave me a number to call for a jet service to take me there if I got the call. When I called it, it was an escort service for big shots that wanted girls on their trips. You gov at work. There were tests after tests. Three shrinks. Social workers, mistake after mistake. One chemoembo with blank beads. Blotched scans. Taken off the list once for an infection. If they had done it I would have died. I but in the last hour a teaching hospital was looking for someone and I was near the top of the list in my area. But because the hospital that did do it was trying to fill a quota to get accrediated and they pulled out at the stops cause the couldnt lose me and went back in. I nearly didn't make it. I was trying to will myself to die it was so bad. I got transplanted with a MELD of 25 there. It's been 2 1/2 years now. Still having tests. MRIs and scan look good but my AFP cancer test is now over 700 and they cant figure it out. So its still a battle. I guess what I am trying to say is, it was then and will alway be a fight of wills. I went through lots of trying times with the gonna die stuff and have come to terms with it again as I did with it before the transplant. So you just never know how it will turn out. Enjoy your time with Gazz and remember the good times and hope for the best. I was alone. He is so fortunate to have you. My motto is Hope Springs Enternal. Best wishes to you and to all my friends here on the TC. Tom

Comment by Ron Bird on June 8, 2012 at 6:31am

Hey guys.  No matter how you slice it, it's very difficult to get through this process.  I do believe that the "squeaky wheel theory" is accurate.  I started with my first appointment with a MELD of 19 and it hovered around 22 for about 2 months before my transplant. I would call with every symptom and change and made myself memorable which I think sped the process along.  Although toward the TP, my referral doctor gave me morphine even though I didn't have pain. They said just take it which made me less hopeful, almost like the end was near, however I got the call that night.  I think God works in ways at which we can only marvel.  I pray that your journey becomes less weighted down by beaurocracy so your team can focus on Gazz's return to wellness.

Comment by Peter james goodman on June 8, 2012 at 5:18am

Susan G.  Its seems as if though the almighty dollar, insurance, and the bureaucrats/politics decide who,when,where,why and how the TP occur.  Previous to my TP, the above always seemed to come up with the (HUM) what else can we put this guy through.  Luckily for me I had a caring passionate Liver team, Doc's, and wife like you that stepped up to the plate to advocate for me.  As I struggled to hang on. I wouldn't be here today to share this.  There is an old saying I'm sure you have heard, "the squeaky wheel gets the grease,"  Squeak like hell and encourage others to squeak like heck until someone wakes up.  I won't stop praying for you and Gazz!  Continue to pray, and get on some prayer lists.  You need some peace yourself, take it!  This advice comes from a survivor and a caregiver.  My wife Susie was there for me, and now we are fighting for her life.  She has stage 4 small cell lung cancer.  It has spread to her left kidney and left adrenal gland.  Whatever you decide, keep praying and know this------you have many strangers pulling for you and God is always with you!  Peace and good journey----Pete and Susie

Comment by Ramona on June 7, 2012 at 10:30pm

Holy crap - there is no reason for all of that miscommunication...and complete lack of communication! 

 

Hang in there - keep trying.  And file complaints about the people that are screwing up - they can't fix a problem that they don't know is there.  We can only hope that someone up the chain of command cares.

 

Hugs - Ramona

 

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